August

Waiting is the worst part…

Written on August 21st, 2013 at 7:30am

Waiting is the worst part!

We got up yesterday morning and got ready for another day of Crystal’s appointments.  It was such a beautiful day in MN.  The sun was out and people were walking everywhere, such a nice town.

Sitting in the waiting room and waiting for the doctors we got a little silly.  I think we had lots of anxiety which brought out happiness because we were almost over with having to wait.

As we waited we took photos and then the door opened up, they came right into the room and looked at us both and came right out and said, “We have found no new tumors at this time”.  We looked at each other and smiled.  Crystal had a frozen smile on her face almost in shock.  I of course began to cry.

Her blood work was good.  They got out the MRI and showed us exactly how everything looked.  They will send her MRI to another team of her doctors just for more feedback but everything looked good at this visit.  Our prayers have been answered.  Thank You, Thank You God.

We will be going back in November for another big appointment in the meantime she will continue with her chemo and in November the next step will be determined.

Crystal was so quiet.  Just like she was in April, when we first came to Mayo but this time there was a smile.  We walked out of the room with that good news, went through the lobby on 12^th floor and Crystal dropped down a little and then began cry.  I hugged her so tight.  We both were crying.  So many tears and trying to keep it together she said, “Mom, if they found no tumors does that mean I am Cancer Free?”  I smiled and with joyful tears I said, “In my eyes that is what it means.”

We found this somewhat private area, with such beautiful scenery and called her dad.  Crystal with the biggest smile said, “Dad I am Cancer Free!  They found no new tumors this time!”  As she got off the phone this older distinguished looking women stopped working on her lap top to say Congratulations.  It gave her shivers to hear Crystal say that.  I will never forget staring at that woman.  I could tell she truly was taken back with our news and we have no idea what journey she herself is on.

We made a few more phone calls and then headed for a late lunch.  Crystal last set of chemo pills was on Sunday, Crystal made it clear we are celebrating mom with a margarita.  I am so fortunate to have a wonderful relationship with her.

Crystal wanted things to be quiet until she told a couple of dear friends in person.  We did make our phone calls and sent out text to some immediate people but that is why I waited to tell the news to you all.  Thank You for your prayers, your support, your donations, your love.  Thank You!

I will admit on the way home thoughts kept running through my mind.  What about November, what about March?  What happens when chemo is done, then will it come back?  And then, and then…Oh that’s right, why am I worrying about the future that I have no control over.  I said a prayer and I must say I focused on other things.  If my mind went back to it, I immediately thought of something else.  It worked.

Just so you all know we will be going back to Rochester, MN on September 21^st.  You are all welcome to join us.  We will be doing the Purplestride Walk/Run for Pancreatic Cancer Research in Rochester.  Our team is CR Spirits.  That morning we will not only be getting some good exercise but I will be speaking before the race not including the CR Spirits will be performing, which means Crystal will be dancing.

On another note, Cassidy is still not good at all.  When Crystal and I got home last night, Cassidy began to cry.  You know when you see your mom; I think we all cry when we know something is wrong.  The pain is still there, the frustration with school starting and not feeling good at all and besides not being able to keep anything in your stomach makes you weak.  We are still waiting for test results.  Today is her first day of her Junior Year in High School, she is determined to go.  I will be calling the doctor at 8am to get her back in.  The worry never stops but this morning I remind myself that God has that for me.

Waiting for Results

Written on August 20th, 2013 at 10:50am

As I lay here in the hotel room and watch Crystal sleep…I worry.  So I open my phone and look at the image I saved.  It’s strange but it helps.  Since I am still pondering I’ve decided to write in the journal, which will surely help me.

It’s been a crazy weekend, lots of performing and smiles.  I must say I am proud when I watch not only Crystal dancing but everyone one of the Spirit Girls in the studio.  How fortunate I am that I get to do something I love.

On another note my youngest daughter Cassidy was showing signs of food poisoning late Friday night actually, right before we were to perform at the Sweet Corn Festival.  So for the weekend Cassidy has pretty much been out of commission.  Here is a photo of her cousin, Lee rubbing her head to help her feel better at one of our performances.  I should have known she was bad when she wouldn’t leave my side.

 

Now Sunday was a new day, a beautiful day.  Jon and Michelle had asked us to go boating with them but with Cassidy not doing well, we decided to stay home and work on laundry and bills.  Besides we were leaving for Mayo Monday morning and it was going to be Courtney’s first day in College.  So we had things to do to get ready.

Crystal however had a wonderful day on the boat.  She was with her Spirit Family.  Lots of memories she made and it kept her mind busy.  She didn’t think much of her chemo pills or the visit to Mayo…Thank You Michelle!

Now back to that Sunday morning as we sent Crystal off and I was keeping an eye on Cassidy…Courtney comes running upstairs with a slight fever and tears…She is certain she has a bladder infection and she needs medicine now, school starts for her at 7am Monday morning and she is scared she will still be sick.  So off to Mercy we went.  Cassidy didn’t go because even though she had flu like symptoms they were more like food poisoning with no fever and she felt she was possibly getting better.  Needless to say Courtney did have a bladder infection.

Okay…Now it’s Monday morning.  I beg Courtney for a photo before her first day on her new journey, her first day going to College.  I will tell you that she enjoyed that first day.  It’s nice to hear her so happy.  She loves meeting new people and is excited to see what her future holds.

However as I am packing getting ready to leave I wake Cassidy to see how her night went with sleep.  Is she better before we head to Mayo?  Nope.  She is sick.  She wants to see the doctor.  As I rush to the doctors they think it could be a Gall Bladder issue, maybe surgery?  Oh goodness and I can’t be at both places.  Yes, the doctor sees me start crying again.  Assures me that we are doing the testing to make sure, you take care of Crystal, and we have got this.

As I pull myself together I take Cassidy quickly to get her blood work done and I call Rod.  I ask if he would like to go with Crystal so I can be here with Cassidy if she needs surgery.  With Rods work it was easier for him to stay put.  So Cassidy is going for a scan at 3:15pm as Crystal and I head to Mayo for her blood work and MRI beginning at 4pm.

As mother I felt torn.  Cassidy was good about it.  She wanted us to go with Crystal.  But as a parent I wanted her dad or mom with her, I knew it couldn’t be both of us, such a worry.

We got into Crystal’s new car and headed for Rochester, MN.  Crystal and I spoke and giggled all the way down.  I was texting many of you and giving you heads up.  I didn’t want to be sad, I wanted to be positive.  I didn’t want Cassidy to think Crystal was more important and I didn’t want Crystal think mom shouldn’t be with me right now.  But since I am an open person each one of those girls heard my feelings and everyone was getting along fine.  Thank Goodness for my Mom.  She helped me see the logical side of things.

Well, yesterday we learned that Cassidy’s testing so far is good however she is still not better so more testing for her today.  She said mom, “dad is a newbie at this”…how cute.  I can’t imagine how Rod feels.  I am sure he feels just as torn.  He’s pretty quite in a house full of women.

As far as Crystal’s test goes we learn today.  I must say the MRI took forever.  I kept thinking did they find something?  Is that why it’s taking so long, they are making sure to get all the photo shots they can?  As I sat in the waiting room, it was chilly and my mind was not positive at all.  I hated it.

When Crystal came out, she was sick.  She had not eaten all day and was very tired.  We went to her favorite spot HuHot and then got our hotel room.  We were both cold, so hot chocolate and a cookie before bed in our matching purple pj’s!”

I asked Crystal is she was scared to learn the results, nervous?  She said, “No, I am just tired and I am trying not to think about it.  Our hotel is nice, what’s on tv?”  Yes, I probably ask to many questions.

Oh please Lord…give me strength today.  What is her journey going to be?  What is our journey going to be?

 

Insurance Again….

Written on August 13th, 2013 at 7:35pm

Well…what a terrible day!

First thing this morning we headed to Mercy to check her blood.  We learn that her platelets are down and will need to be checked on Thursday to determine the next step.  But since Crystal is going to Mayo tomorrow, they will let Mayo’s Team of Doctors decide what to do.  Remind you she is scheduled for surgery on the 28^th of this month for her tooth, it is becoming even more sensitive so trying to stay on a schedule can be difficult with Chemo.

I am now at home.  I am paying bills, doing laundry and thinking of life when Crystal walks through the front door and says with a concerned tone, “Mom!”  At first I thought OMG did she wreak her new car?  Nope…it was worse; she received a phone call from Mayo, at 2pm and rushed home to tell me.

The phone call basically stated that if they do not receive an authorization number today that she would have to reschedule her appointment or pay out of pocket.  Remind you this visit would cost approximately $5000.00.  We were told to call our Insurance Company, United Health Care.

I immediately calmed her down and said it is 2:15pm in the afternoon, I am sure we can figure this out before tomorrow morning.  6:00am is her scheduled appointment; we were leaving our home at 2:30am.  I called United.  The gentleman on the phone, Caesar…was polite, an informed me that basically the Doctor’s Order had not shown up, so they could not approve it or disapprove it because nothing has been sent over.  Strange?

So back on the phone to Mayo…which now informs me of the phone call that had taken place plus the fax number that was given to them from United Health Care and the confirmation number that shows they received it.  Remind you this was done on August 7^th and again today.

And as of today, they talked to a Denise and got another fax number to use.  They have a total of about 10 fax numbers from United Health Care to use…Hmmmmm that would be too many chiefs and not enough Indians…maybe stick with one number?  Then it wouldn’t get into so many different hands???  There would be one story not 10.  This would be some advice from Mayo and me.

So back on the phone to United Health Care, they state they have no records of anything.  I even state do you think that it is just not entered in yet today?  They state no, it would show that it was pending.  Meaning it takes 24 to 48 hours to get the authorization number but you can see it in there from the fax.  They advise to reschedule the appointment because if they give the authorization number on Thursday but she gets checked on Wednesday…they will not cover it, even though to me they have dropped the ball.

No matter who I talked to…it takes 24 to 48 hours.  So we call to reschedule.  Crystal is beside herself which makes my heart hurt.  Talking to the scheduling department they are doing their best to get us in next week to keep Crystal on track.

The appointment we had for tomorrow was scheduled 3 months ago so trying to change it in a week makes you have to stay in Rochester for possibly a few days, which means hotel rooms and extra expenses.  Thank God I didn’t book a room tonight because I wouldn’t have been able to get out of it.  Plus Thank God we live in Iowa and it’s only 3 hours away, I am not on an airplane coming in for the night and finding out I am not going to be seen unless I want to be even more broke.  What a joke!  How many people does this happen to?  Why is it confusing?  Who is passing the buck?  I make my monthly insurance payments.

As I am trying to gain control of the situation, I have Crystal contact Mercy; she has to get those platelets checked on Thursday.  Crystal can’t even catch her breath to make the appointment.  My eyes are just filling with water.  Looking at her with tears running down her cheek and hearing her voice crack put me in such a sad state.

Why is life so hard?  Why is it so difficult to make an appointment?  I guarantee you Crystal and I want to know about her MRI.  Is there any more tumors?  I guarantee you the Doctors what to see Crystal as well.  But to me it boils down to money, the Insurance Company.  How can the person from the Insurance Company who can hear the hurt in my voice.  Here the common sense in the situation.  And then get off work at 5pm and live the rest of her day?  I would love to know their turn over in that department because I can’t imagine having to fake being nice to a decent mother on the phone of a child who has Cancer.  Makes me sick!

Now we are at the studio, I am in my office, the door is shut.  The tears have stopped as I have focused on the positive and I get an email from Crystal.  An update for her website…How funny, I was writing one too.

As I read her words with her thoughts…I think to myself, I hope writing that helped her get that off her chest.  We don’t know the exact schedule for next week but we know blood will be checked on this Thursday.  I am glad she didn’t sign up for college classes with her sister because next week is the first day of school at Kirkwood and it looks like she would be missing a lot of that week and then the following week is a schedule surgery for her tooth so another week of school missed.  Not sure on what the plan is but for now it is one day at a time.

Its funny how so many people as they get older become bitter and resentful.  I have always said I hope I never get like that but I must say I know why so many people do.  So I ask God please give me strength to avoid that path.

Crystal’s words…

Tomorrow was supposed to be a big day for me, but not anymore. I got a phone call today from the Mayo Clinic saying my insurance isn’t going to cover my cancer check that is supposed to be scheduled for Wednesday August 14. My mom and I called our insurance company and they said they never got an authorization number. Then we called Mayo Clinic back and they said they sent it. Just to remind you…..this appointment has been scheduled for three months and I am just now hearing about it, the day before I leave. All I can say is what a joke.

Here I am fighting my cancer every single day and all I want to do is go to my appointment tomorrow to see if the tumors came back and spread or for them to tell me I am cancer free. Then we have this thing called insurance that ruins everything. Instead of, taking care of myself and worrying about my appointment. All I am worried about is if my insurance is going to let me go to my appointment.

Insurance is all a money scam…they don’t care about you or your family or health. All they want is your money and that just makes me sick.

Since I am going through chemotherapy I don’t always feel the greatest, but I am so positive so I don’t cry a lot about it. But once your insurance company says…”Sorry Crystal you’re going to have to reschedule your appointment”, that just puts me in tears.

So I guess today I learned I really hate insurance companies…especially United Health Care…. And I think they need to figure it out because you seem to piss a lot of people off.

To leave on a positive note I am doing great with my chemotherapy and I am feeling better than ever. And since I will not be at the Mayo Clinic tomorrow I will get to go to dance class! See ya girls there!! We have a big weekend of performances ahead of us and I can’t wait to be a part of it. The Iowa State Fair Performance this last weekend was a great memory for me.

Love, Crystal

Wisdom Teeth?

Written on August 9th, 2013 at 1:45pm

Happy Friday!

This week has been a roller coaster.  On Monday, Crystal started her chemo again.  On Monday, Crystal had an appointment for her wisdom teeth.  Now, you may think that it is crazy because you know they don’t recommend any dental work done during chemo.  But Crystal is having some issues with her wisdom teeth.

In the doctor’s office we wait.  We actually played on her cell phone.  We actually were Face Book Stalking, so lots of giggles and then the doctor came in.  We have learned that the one tooth is infected and needs to come out.  This can be tricky.  They would normally take out all 4 wisdom teeth but they will only take out the one at this time.  With chemo there are so many more things to worry about.  Her blood counts plus infection because her immune system is down during this time.  The tooth needs to come out at the end of this month, right before the next chemo schedule.

Yes, it is scary.  And she can only take it out if her blood counts are good and she is off chemo for almost the two week period.  Now remember her schedule can change at a moment’s notice, so we pray that we stay on this task.  If we stay on course than we know when surgery is, we know that her blood work is good enough.  We have some control.

Besides the emotion of, you’re kidding me something else?  We learned they wanted surgery done on Friday, August 30^th.  That about put Crystal over the edge, the tears were flowing.  That day is the CR Spirits Professional Dance Team’s Year End Party.  The Spirits is really something that gives Crystal a chance to be normal and everything seems to interfere with it.  Now, as the owner/coach of the team…we just can reschedule it but trying to tell that to Crystal is another story.  Yes, we had some tears.  So surgery is now Wednesday, August 28^th.  She will be doing a lot of blood work that week.

With that emotion, that stress, those tears we headed out for lunch with her sisters and then went home to take a much needed nap…It was like we woke up happy, had an appointment, cried, ate, went back to bed and then got up and went to the Studio…which of course put us in a better mood.

However, Tuesday was much better!  Since Crystal was moving home, she thought she would get a better car.  We looked at quite a few.  We looked at what she could afford.  My uncle was willing to help with a signature and my mother gave her lots of help.  Billion Automotive in Iowa City was wonderful and to top it off the car she got, was a Hyundai!  Hope on Wheels….proceeds goes to kids fighting cancer.  It was a sign, the perfect car!

Now this weekend we have the performance at the Iowa State Fair.  We are looking forward to it, as we always do, but I think the weather is going to be perfect which makes it even better!  Crystal will be performing on the Budweiser Stage at 4pm on Saturday, August 10^th.

With all of the emotion this journey has brought our family.  At times the feeling is hard to describe without sounding negative, depressed and angry.  Staying positive, keeping my family together, and thinking of the future, plus focusing on the Spirits and Spirit Family really takes up a lot of my time.  I worry about all of this, but then in my mind I am already 5 days ahead concerned about the Mayo appointment and scans next week.  Learning patience has been a huge part of my life in 2013.

Sometimes it can be so much…with work, schedules, appointments, performances, bills, children, sick children, and marriage…its life.  We all have a story.  It’s how you deal with it.  It’s doing everything in your power to see your class half full, knowing that God gave us all a gift, a journey…to help others.  Looking at it that way sure makes you feel better.  When I asked Crystal to write an update for her website she said, “Mom, it can be so depressing writing it.  I don’t like living the emotion again.  I like it when you write it.  I enjoy reading it.”  I guess you can say I like to get it off my chest and Crystal likes to forget about it.  I don’t blame her one bit!

On another note…I was doing some research on pancreatic cancer…needless to say it was sad and I deleted my history so I would not have to look at it again.  But I did find a walk/run in Rochester, MN on Saturday, September 21^st at 7:30am.  We would love to have you be a part of this.  I am going to make a team…Let us know.

Rochester PurpleStride Event

Pancreatic Cancer Action Network

Our Mission:

The Pancreatic Cancer Action Network is a nationwide network of people dedicated to working together to advance research, support patients and create hope for those affected by pancreatic cancer. Go to www.pancan.org for more information.

Follow: https://www.facebook.com/PanCANRochester

Get Involved: http://purplestride.kintera.org/faf/home/default.asp?ievent=1065197